The Value Of A Life

The Value Of A Life

Krystal L. Smith

I found myself sitting terrified in a perinatologist's office, waiting to determine if the blood screen for trisomy 18 was truly positive. After a level II ultrasound, the doctor said he did not see any markers of T18. I was offered a CVS, and opted to have it. As we chatted about the testing procedure, he pointed to the door and said, “If you look on the bulletin board in the hallway there are women on it who had a trisomy diagnosis, terminated, then had a healthy pregnancy and baby the very next try. If you wanted to be more discreet we can send you to another city. If you choose to carry, we will support you, but your baby will suffer when it is born. He will suffocate. They can give him morphine, but it will be very painful.

In medicine, I have heard it a thousand times. “I took an oath to first do no harm.” What I have found in my time spent in the hospital, is that what is ethical is extremely subjective. I have many thoughts on what the value of life is, how human beings should be treated, and ultimately the role of healthcare professionals in deciding the treatment of any person in need. My goal is to express the view point of a mother with a medically complex child on matters such as ethics, treatments, and research.

When I look back on the conversations I had with a variety of doctors during my pregnancy, I cannot remember a single time hope was offered to me. I was never told there are living trisomy 18 children. The terms used most frequently were “not compatible with life,” and “not a viable pregnancy.” I chose to carry my son to term, though I was told he would likely pass in utero. There were many days in that first trimester I wondered how I could carry on. My heart so full of love for a baby who wasn't going to be here very long. How will I do this? I promised him from the time I knew he existed, I will give you your best chance. I decided that wasn't going to change because of a diagnoses. From then on, I did everything in my power to help him. I ate well, I exercised, I took supplements and vitamins, I drank water until I would nearly float away. Anything I could do to help him, I did. As time went on, I began to have a little hope; cautious hope.

Calloway Augustus, “Gus” as we lovingly call him, had to be induced at just over 41 weeks gestation. The baby who wasn't supposed to make it to a live birth was going to be born. I had met with a team of doctors and nurses who said they would make sure my birth plan was understood and followed. They promised Gus would receive the interventions I asked for. Everything was planned. NICU was supposed to be there for his birth, everyone knew I wanted full interventions unless otherwise stated. I was assured that we would be taken care of.

December 6, 2016 a beautiful baby boy entered this world. He was born without a doctor present, without the NICU team we were promised, and ultimately lived in spite of the lack of care. We had been told he could be monitored in the delivery room to remain close to us during our prenatal care conference. All of a sudden this was not true, and we were told we could just hold him and spend time with him alone. If he turned blue, they said they could be back in 10 minutes. My family insisted they take him to the NICU since they refused to monitor him in the delivery room. Away little Gus went, crying and breathing on his own.

The care we received in the NICU was poor. While they did give him oxygen as needed and a feeding tube, they refused to do anything else. My mother and sister had done extensive research on living trisomy 18 children and knew the common problems associated with the chromosome abnormality. They knew what tests we needed and why we needed them. We were refused all testing we requested with the exception of an echocardiogram. At one point I was told by a doctor that nobody sees the economic value in trisomy children and that it is considered silly to intervene. He told me he had a child with a chromosome abnormality, and that there was no way he was going to give up his lifestyle to deal with that. He and his wife terminated the pregnancy. He told me people will be cruel, say horrible things to me, and that my marriage will crumble. He said my life would be over, and that I am a much better person that he is. While he stated he was a Christian, and his wife is a saint... I am certain he is very confused about what that means. We were sent home after two weeks and remained there about ten days before sweet Gus started having O2 desaturations to the point we had to take a helicopter ride to a children's hospital. We never retuned to the hospital I gave birth in.

Upon arrival, we were told Gus likely had a respiratory virus. With Gus's diagnosis, he knew that we wanted as much time with our son as possible and they hoped to give me that time. I looked at him and told him I know his diagnosis, and that our goal is to get well and go home. He stated it was clear that I understood what Gus has, and he will put a note for other doctors not to give me “the talk” again. He was treated for respiratory distress and recovered quickly. While we were there originally for respiratory distress and apnea, other problems were discovered and discussions about treatments and the degree of interventions began to be discussed. I was told repeatedly there was no reason to do a sleep study, that apnea was apnea, and what difference was it really going to make? I was told that a tracheostomy would not be helpful to my son because he had central apnea, and he would be vent dependent with no quality of life.

This doctor with another backing him up, went as far to tell me he hoped I would be reasonable and not do “too much.” He claimed we do too much for these kids in this country. He also stated that if he was in a car accident, he would come back to haunt his wife if she ever got him a tracheostomy and a vent. He said he told her to let him die, because he would be miserable. One of the reasons he said it would be unfair, is that my son would not be able to swim under water and I would never hear his voice again. His idea of quality of life is apparently going under water in a swimming pool. According to him, once you are trached you are always trached and nobody ever gets off of a vent. He pressed me to answer him about whether or not I would consider a trach for Gus, and I mumbled well no, I would never want to hurt him. During this time, I knew little about trachs or vents. I only had the information he wanted me to have. Unfortunately, I was only being told one extreme in a large spectrum and being fed a lie that suited this particular doctor's “ethics”. Later, because of a very special pulmonologist who has living t18 patients, we were offered the sleep study that I had desperately wanted. It was determined that Gus did not have central apnea, he in fact had the most severe case of obstructive apnea this hospital has ever seen. After doing my own research and speaking with the tracheostomy nurse, I learned children get decannulated all the time and vent weening is standard procedure. Yes it is possible you always have a trach or always need a vent, but I was told nobody ever gets rid of either. The trach nurse and I talked about what life looks like with a trach, and she explained Gus could have a great quality of life! Even if he needed a vent, it would not keep him from a great life. She explained the trisomy children are her favorite, and they definatly have a place in this world. Her view was quite different from the other two doctors who continuously told me a trach was a bad idea. As I look back, I remember thinking, isn't not being able to breathe a worse idea?

One of the repeated arguments I hear is how uneconomical it is to intervene for trisomy children when they have such a limited life expectancy. The question is often why would we do anything, go to all the trouble and spend all this money on a child who will be a vegetable. There are several points to be make in opposition to this argument. First, trying to base the value of a human life in monetary terms is absurd. Ask anyone who has lost someone they love what they would give for one more day, 5 more minutes, or one last hug. The answer is usually a simple one. “Anything.” Have you ever heard someone say, “Well, I would give 200 dollars, but any more than that would be uneconomical.”

It seems discriminatory that there are some chronic illnesses that are deemed worth treating, even if the outcome is dark, but others are deemed not worth the effort. I have always compared it to things such as cancer or cystic fibrosis. We don't just give up on giving those kids their best chance, so why is it that something like an extra chromosome devalues your right to treatments and your best chance at life?

There is a huge misconception when it comes to trisomy 18 in particular. There are living children who are thriving. They are far from the vegetables that their parents were told they would be. These children are full of personality. They smile, laugh, cry, and communicate. I am puzzled as to why these stories and the wide range of outcomes is not explained to the parents by physicians. Why are doctors not reaching out to groups such as Rare Trisomy Parents on facebook to see the wide range of trisomy outcomes and all the things these children can do. At what point will physicians start looking at the dates of the research they are reading and realize this is a different day and age. The majority of studies conducted were in the 1960's. Medicine has come a long way since then, the problem now is an ethical one.

Another argument I often hear from the medical field, is that these children are burdens to caregivers and ultimately destroy family relationships. I would argue that trisomy 18 children are some of the most loved in the world. I do not know one parent of a living or deceased trisomy 18 child who regretted their decision to carry their baby and do all they could to help them live. My child is not a burden to me or to my family. We love and cherish every moment, every single day. No one feels burdened. The biggest burden we carry is the fight for equal rights to medical care. The stress from this aspect is the most unbearable at times. Our children teach us lessons others may never know and fill our hearts with the most joy imaginable. To call them a burden is insulting.

Every child is an individual. The range of outcomes goes from mild to severe with all trisomies. Not everyone fits into one box. How can we limit interventions when we cannot say with certainty how a child will be effected? Is it not worth trying simply because there is an unknown factor? Would we do that to a child who does not have an extra chromosome? What is it that determines who lives and who dies, who gets treatment and who doesn't, who is worth the effort and who is not? A diagnosis is not a prognosis. To deny a child care, who cannot speak for themselves is unethical. Doctors have a right to deny care if they feel it is unethical to intervene, but they should refer parents to someone who will treat the child if they see it as the best option. Often people think they know what they would do if it was their child. But truth be told, you don't know until it is your child. What is the value of a life? It is invaluable. You can't put a price tag on love.

Against All Odds

The story of Gus's birth is a hard one to tell. It is such an important piece of the his story, and it needs to be told. While the pain of that day will always haunt me, the miracles that followed from his first breath and every day after are a testimony to the power of Jesus.

We pulled into a gas station to fill up before the 37 mile drive to the hospital in North Austin.  It was induction night. I had several bags packed, pillows, my diffuser and lavender oil, and keepsakes for Gus. I started crying as I waited for my husband to fill up the tank. I cried the whole way to the hospital and balled when we parked. It was cold, it was dark, and it was time to have my baby. I didn't want to go. My family helped me drag all my things into the hospital. We had to wait an extra 30 minutes for our room to be cleaned, more time to worry and more time to be frightened.

I got to my room, put on my hospital gown and waited quietly for the nurse. My first nurse was amazing. I will never forget her. She had a cousin who had a T18 baby, and she was very sweet and uplifting. She took excellent care of me and monitored Gus so carefully. She made sure she slowed down the pitocin if Gus was stressed. I adored her. I will always wish she had been there the next day when it was time to push. But she wasn't. Another nurse came on duty at 7 that morning. This is when it all started to go wrong.

By 1 pm it was time to push. This new nurse told me to bear down and push as hard as I could and to take a breath and push again. It didn't take too many pushes until Gus crowned. There was no doctor, but the nurse said she had called him and he was on his way. Instead of waiting for him, she continued to order me to push, bear down, as hard as I could. I told her I felt like he was going to come out.... and he did. Gus's head was hanging for minutes while this nurse frantically yelled at my sister to pull the emergency cord. Nobody knew where it was, there was no label that said "EMERGENCY CORD".  After finally finding this cord and pulling it, "the stork" was called over the loud speaker repeatedly. Nobody told me who the "stork" was or why he was being called. Actually nobody told me anything.

Next thing I know there is a man with glasses and a surgical hat and scrubs on staring at me from below my legs still tucked into the stirrups. He says nothing to me. Gus is taken to the warmer and the NICU team comes rushing in asking what is going on. The Stork, is talking to the nurse saying there is a lot of bleeding, and the cord is too fragile, therefore delivering the placenta is going to be difficult and risky. Again, he says nothing to me, just looks at me with ghoul looking eyes. Nobody reassures me, nobody tells me if Gus is ok. My mom and sister just keep saying Gus is perfect, he is perfect. I see my husband crying. I am in a fog. I don't know what is happening. Chaos ensues.

My OB shows up, says nothing to me, just barks, "Somebody turn on the lights in here". Mumbles something about me having several tears, and starts sewing me up. At no point did anyone ever tell me how Gus was, or say I am so sorry I wasn't here. There was no explanation for how or why things were so out of control. 

I hear the NICU nurse asking what we want to do with Gus. She has the birth plan in her hands, I have met with her previously, I have had several email correspondences about what I wanted for Gus, yet here she is, questioning repeatedly what my wishes are. My sister asks if we can have a pulse ox to monitor him, we are denied a pulse ox. They tell her that they cannot leave one in the room unless a nurse is present the whole time. My sister says take him back to NICU to be monitored, and again they ask if we just want to hold him and keep him with us. They say if he turns blue they can be back in 10 minutes. I cannot understand why this is happening. We met with everyone before Gus was born. Everyone knew the plan. We were told he could be monitored close to me in the room unless he needed extra support. Why are we now being told that wasn't possible, and why is everyone acting like it is ok to just leave us alone with him? The trauma of the whole thing is not something I will likely ever be able to express in words.

I can't really say what happened in between all of this. I know at some point my husbands family was allowed to come in, and Gus was in my arms for a little while. There are pictures of this, though it is so foggy in my mind. Gus and my husband are taken to NICU, where Gus did turn blue and his oxygen saturation plummeted. Daddy was holding him when it happened. What if we had just kept him with us? Would he be here right now? NICU could be there in 10 minutes? Gus would be dead in 10 minutes. Looking back, I recognize that Gus was indeed supposed to be here. He survived what I would call a traumatic and horrible birth into this world. I wish I could say it got better, but it really didn't.

Gus was given a feeding tube through his nose, and placed on oxygen. He was given formula without my knowledge, and did not tolerate it. He was then given IV fluids. By the time I was released to the antepartum wing, it had been several hours. Eventually I was able to be wheeled over the the NICU to see him. He had the deepest eyes, so blue, like pools of water. I could see that Gus had knowledge beyond his age, as if he was a very old soul. By far, he was and is the most beautiful thing I have ever laid eyes on. There is something about him that draws you in. He is mesmerizing.

There are many more medical details I could go into, but this story isn't really about the medical aspect. It is about the human aspect. I was assigned a primary doctor in NICU, who really didn't want to do anything for my son. They went through rotations, we would have a different doctor for a day or two, then the primary would return. I was refused an EEG and told Gus was not having seizures, I was refused an airway scope, but finally got one which I would deem as completely inaccurate. I was refused a sleep study and told Gus had central apnea. I was refused a visit from pulmonology or any other specialty for that matter, and told that I could see all of these people out patient. They did get Gus a cardiologist and that was how I learned Gus did have a VSD and a small PFO. I was told that room air was not an option at home, and that such a machine for home use did not exist. Someday, I will type up a list of what I asked and what I was told, because there were so many ball face lies, it is truly shocking. There was an article titled, "Is Your Doctor Lying To You?"... let me spare you reading that and just say from my own personal experience... YES, it is highly likely you are being sold a bill of goods that is no where near the truth.

It is hard to imagine that the people who swore to do no harm, are actually the ones inflicting harm on innocent babies by denying them the care they deserve. Yet, I promise you, this happens every single day, and if you are not educated on the issue at hand, you are at risk of becoming a victim. Thank God my sister and my mother spent my pregnancy researching. I wasn't able to do so while I was pregnant. All I could do was get Gus here. My family advocated for Gus, and while we were denied so many things he needed, we got enough to keep him alive, and that is what this next paragraph will be about... going home.

Two weeks of NICU and it was time to go home. We had fought for home equipment, and thankfully had blow by oxygen and a pulse ox to monitor Gus with. We had a feeding pump and NG tube for nutrition, and caffeine for his "central apnea".  Home was better than the hospital, but still horrible. The monitor would go off all the time, feeding was so hard because it had to be done every three hours over the course of an hour and then you had to clean the bag. By the time you checked tube placement, changed a pamper, ran the pump and cleaned it, plus jumping up every 5 minutes when the monitor dinged to make sure he didn't need blow by... it was time to do it all again. Nobody slept. It was a nightmare.

New Year's eve, at around 5:30 AM I had to call 911. Gus's oxygen saturations were dropping into the 40's and I was having trouble keeping him up. An ambulance picked us up and we went to McLane Children's where Gus was well taken care of and stabilized, then took a helicopter ride to Dell Children's. He was admitted and they believe he had a respiratory virus. It was truly a blessing to have to come here. This hospital has treated Gus a million times better, and the team that eventually was formed has gotten him the things he needed. It was found that Gus does have seizures, he does not have central apnea, it is obstructive. His airway is the worst obstruction they have ever seen, and it is miraculous that Gus survived at home. That little boy has the kind of fight in him that doesn't quit. Truly, he makes it look easy, though I know it was not easy at all.

While so often I am faced with medical professionals who insist that the worst case scenario is always the outcome, my little mister continues to prove this false. He brings so much joy to his family and his nurses. I take videos of him doing all the things a 2 month old is supposed to do and force doctors to watch them. I am in contact with other families who have living trisomy 18 children and I share their children with medical professionals as well. It is hard to understand how they can not know these children do exist, especially in an age where information is a click away. Yet here I sit daily, shocked at the misinformation and ignorance stated by doctors.

It is a fact that there have been very few studies on trisomy 18 since the 1960's. I find those studies to be ridiculously outdated and not something to put any stock in. The statistics are skewed, mostly because people believe what doctors tell them and assume their child has no chance of survival so they choose comfort care with no interventions, or they abort. How many kids would live and have a great quality of life if we gave them the opportunity? Well we don't know. I can't say for sure the numbers would change, but neither can doctors... why? because there isn't any research. There are many still births and miscarriages with trisomy 18. There are babies so severely effected that they probably are much better off just being in their mothers arms. A mother knows when it is time to let go. Every case of trisomy is different. Children are effected differently. Ultimately, the parents should be the ones making choices for their children, not a doctor. The push of medical "ethics" is actually unethical. If a medical professional is not educated in all possibilities, they should learn. If they know the possibilities and only give the worst case scenario, they should lose their license. A family needs all the information, not just the portion that suits the doctors beliefs. But that is for another post another time.

I was told to include my religious beliefs in my birth plan and if I wished for a Chaplin to be present. I wrote that I did not want a Chaplin, and that we believed Jesus himself would be there. It is clear to me that Jesus is always there. Even in the most heartbreaking situations, He remains. We have to actively reach for him because the chaos and pain in our lives will steal our awareness of Him. Miracles are not just the big things in our lives that cannot be explained. Miracles are in the every day, every moment things... like breathing. Gus was born alive against all odds. Gus went home against all odds. Gus lived with the most severe obstruction this hospital has ever seen, against all odds. Gus went through a large multi surgeon surgery and survived, against all odds. Gus went into recovery with no complications and is healing, against all odds. This child was meant to be here. There is a plan for every life. Gus has a purpose. He deserves his best chance. WE ALL DO.

Night Before Induction

I went for a very long walk tonight, just around the "farm". I watched the chickens running around snatching up worms and scratching the dirt. I looked at the trees, and watched the wind whipping in the new season. It was cold and damp. I just needed to get out and spend some time with my thoughts... spend some time with Gus.

As I walked, I thought about how this was the last walk we would take with him still on the inside. I thought about how much I love him and all the things we have done together. I looked at my weight set and remembered all our summer workouts and all those squats we did. I looked at my yard chair and thought about the time we spent together sitting in the sun and making homemade ice cream with family. I went and sat under the big oak tree where my Dad's memorial rests and told Gus how proud Grandpa would be of him.

As I sat there, I cried. I told God how grateful I was. How thankful I am. And as I cried, I remembered the storm He had sent me that summer night in July. I remembered what He told me. I don't know what is to come, but I know He said it is going to be ok. So as I wrestle with all my insecurity, all my fear and all my doubts, I am holding onto what God told me.... it is all going to be alright.

We are scheduled to induce tomorrow night at 8pm. I imagine Gus will be here early Tuesday morning. I am by the doctor's estimate 41 weeks and 3 days pregnant today... but by my calculations I am only 40 weeks and a few days. I believe whole heartedly my due date was wrong. My OB thinks Gus will be 8 to 8.8 pounds. He has not had anything on his scans to indicate serious problems to date. In fact, there has never been anything on his scans, but a soft marker. NICU is supposed to be present at birth and it is my sincere hope that Gus doesn't need any extra help. It has been the hardest walk in my life... but I can honestly say that I have never loved anyone more. I am truly grateful for my family and my support system. I could not have done this as well without you. Please pray for my baby boy. Goodnight 🙏

Just An Update

It has been bothering me that my last post was so.... sad. I don't like leaving things on such a doomed note. I will admit, there have been some very hard days and moments lately. Yesterday was particularly rough. Anytime I troll the internet for hope, I seem to find a ton of negatives and few to no positives. Google is not your friend guys. It only fuels fear and emotional bombs that don't do you any good. It is important to get as much information as you can, but google is not always the best place to get it. I highly recommend going to people with experience for answers. Not doctors, actual families. Even then, you have to be careful who you reach out to, and you will know almost immediately if they will be helpful and encouraging to you, or if they will try to steal your hope. I have mentioned before there is a very large range of outcomes, even though statistics would have you believe everybody experiences the same thing. This is not true. I know better than to start googling, but it was like yesterday once I started I could not stop, and thus ended up utterly unhelpable. I don't think unhelpable is actually a word lol, but you get it.

I feel much better today. I slept so hard, my husband said I was talking in my sleep, saying, "hello? hello?' I suppose I was answering a phone lol, I don't know. But I know being exhausted is never good! I slept till 9am, and I feel so much better now. Gus is up in my diaphragm, and his feet are under my ribs. He has been an active boy lately. He has defiantly learned a new game we started a few days ago. We call it "Knock, Knock".  I tap him, and he taps me back. I ask him where is mamma, and he bumps me back. I love it, and he will only play it with me! I have really enjoyed it and it makes me feel so good. Last week we got to see him SMILING on ultrasound. This was also wonderful, and it encourages me greatly.

Health wise, we have been very blessed. He looked great on his BPP scan, and it is very evident he is growing. He has dimples on his cheeks and knuckles. For T18, weight is very important. The bigger he is the better. It was predicted he would weigh 5 to 5 1/2 lbs. This is very good, but I am hoping he gets up to 6 lbs. I should never complain about anything, because he has certainly done outstanding in the T18 world. Of course I stress, and of course I have a hard time sometimes, but I am fully aware of how much we have going for us and am extremely grateful. As the clock ticks, I continue to think, I am just not ready. My due date is in 3 weeks, and I hope that when it is time to go, I am excited and not afraid. I spend most days just being with Gus. I adore my time with him. He has changed me in so many ways, things I could never have known without him being a part of my life. I probably don't even know the full extent of the lessons I have and will continue to learn from him. Thank you all for your love and prayers and continued encouragement in our journey together. I am so happy to share Gus with everyone.


See that sweet dimple!

I Just Want My Baby

I have been sobbing for hours. As I heard once, "It is not well with my soul," and yeah that about sums up my emotions today. When I started this blog, it was in hopes of contributing something to the world. I don't have any idea what that contribution is, but I do know that in order to contribute you have to be honest. In the midst of this gut wrenching pain emotionally, I am going to be honest about how I feel.

I had my final maternal fetal medicine doctor appointment today. They did a growth scan. I had hoped Gus was going to blow everyone away and be at least 4 lbs. (Really I wanted 4.75) He was not. According to their calculations he is about 3.6. That alone upset me. But then it got worse. Apparently this time they see a gap or something on the back of his head. I don't ask questions usually. Today I went all out and just laid my cards on the table. Could this be a mistake? The doctor looked at me and said because of his growth restriction and the gap, that it was a typical sign of T18 and he was not going to bull shit me as a parent.

While there is obviously still the good news, that we should be rejoicing over I suppose... his perfect heart, his good cord flow, my excellent fluid levels, a good placenta, his continued interval growth.... I am unable to focus on that. Instead I can only see what I feel. It was as if the hope in my heart flew right out of my chest, landed on the floor and burned into a tiny pile of ash.

I was asked about things such as induction early, at 37 weeks, and of course I said NO. He went on to explain that with a growth restriction they have to offer that and he has to make sure I understand the longer he is in there the higher the chances of still birth. Blah, blah, blah. We agreed that because of his other wise good condition, no defects such as a heart issue, that Gus will most likely make it well past 37 weeks and labor will likely occur naturally. So I will be monitored with an ultrasound weekly now to check on him. I guess if it is determined he must come out early, we will do so. It does not look like that will be needed. The doctor claims early induction at this point would be just for my sanity and anxiety, if I was "tired" of being pregnant. I said listen, I know what your saying, but just so we are clear, we are doing what is best for Gus. He needs as much time as possible for lung development. To his credit, he agreed with me and said he realizes I am well educated and he will pass on my wishes to the delivery staff. I can't knock this guy, he is better than the rest were. He did call me later and was really nice. He had found the NICU lady with my birth plan and made sure everyone had it. He said that often things fall through the cracks and he didn't want anybody giving me any trouble when the time came. I thought this was thoughtful and I appreciated it.

I am angry at God. I am talking with Him about it. I know lots of people want to tell you their theory on "why" this is happening. Let me tell you my theory... it just is what it is. I am not going to get an answer. Nobody is. Bad things happen to babies and children and families EVERY. SINGLE. DAY. Sure we all want to think it must be for good. Perhaps I can think of positives. Does it make two shits bit of difference to me? No. I just want my baby. Period. I don't care about some big picture. Is it possible that the answer is really a simple one? Life here is temporary for all of us. Young and old. Everyone is going to die. Nobody gets to live here forever. And if you are a believer, you know better things await us on the other side. That doesn't change how hard it is to drag yourself through your time in this world. It does make death something to look forward to, although that is frightening as well.

I think about a wide range of things with Gus. I cry the hardest when I think about him not being with me anymore. He goes with me everywhere. I read in another mamma's blog how nice it is that she never has to eat alone, sleep alone, go for walks alone... and I blubber at the thought of not feeling him with me all the time anymore. I wonder how will I be able to go on without him. Then I think about my Dad, and my Grandma and Grandpa, and how if Gus dies they will be there to tell him all about me... and of course Jesus. Yet I am not all that comforted by that either, because I will be left behind and wishing I could be there too. Sad and knowing I can't leave everyone here behind and will have to just wait my turn. There isn't a happy ending for me.

Some people like to say, well he could live. Yes he could, and it would be amazing to keep him as long as I was allowed. He is still going to die before me. That is not natural. It is not fair. It is horrendous. I look at other people and think... you don't know how lucky you are. And they don't. But I used to be them. I lived in a blissful place of complete ignorance to what it is like to face losing a child. I would not consider myself bitter, but I can see how some people get that way. Social media in particular grates my nerves... facebook is disgusting. People trying to prove how great everything is for what reason I am not sure, then on the other hand, people crying about insignificant problems... I simply cannot handle it.

These are the raw emotions of a mother in complete torment. I have zero control over what is coming. I could sit here and pretend I have so much faith that it is all going to work out... But that would only be like wearing a mask and hiding the truth. The truth is I am broken. I am completely beside myself and nobody can help me. I can call on Jesus, and I will. I do. But He cannot take this pain from me. To hide this side of the journey would be a disservice to all. You have to see the ugly. You have to see the darkness. Otherwise, when the light comes through, you wouldn't understand just how dark it really was.

That is why I write.  God uses things for good. He will use my dark to create some sort of light. Even if I don't "feel" it. I believe it. Because the Good Book tells me so. Faith is a choice. Never a feeling. If my faith was based on how I feel... I would have been lost long ago. Eternally grateful that my God understands where I am, He understands my anger and my sadness, and He forgives me for all of it. I am so small, but He is so big. I may be angry the rest of my life here on earth. I may be sad the rest of my days. My hope is not in this world. I hate this world. My hope is in Jesus. And that no matter what happens here... all my tears, all my pain, will be wiped away when He comes for me.

Their Story Is Not Your Story

I have had this post on my heart for a while now, but wasn't sure how to word some things and was half afraid of the response. But if you know me in real life... then you know I generally just come out with whatever it is weighing on me. I am an extremely "real" person. Some people may not like that, but personally, I think it is a great quality lol!

When I got our diagnostic test results back, I knew I should seek support somewhere. The counselor in me knows that some things you need help with, and I should look for resources. So online I went, the world wide web has an answer for everything right? The first thing I googled was "support groups for Trisomy 18". The first group I found was on Baby Center, titled, "Carrying to term with poor/fatal diagnosis." Well that sounds like me... so let me join in here and see what this is like.

I read many posts, and looked at some pictures of people's little babies who had already passed away. At first, I could not bear to look at them. It was so painful and so insanely hard to imagine that this was what Gus would be like. Over time, I began looking at the pictures more and feeling more ok with post passing pictures. I began to understand that these were the only photos these women could have and that these babies were beautiful little beings. It took a long time to get there though. 

I read about people who were struggling with just finding out a diagnosis, and some who had just given birth and lost their child. Others posted about missing their babies who had passed away months or years before. There was a large variety of fatal diagnoses and I often had to google them to understand what they were. I found a couple of girls who I was drawn to and ended up communicating with them more often than others. One of them was particularly special to me, and we decided we would text instead of using baby center only. I am really grateful for her, she has been an important part of my support system. I also found a few wonderful souls on Instagram and have been blessed to share in their journey as well.

Like most things online, there is always a bad egg in every crowd... and that bad egg or eggs ruin things that are for the most part a good thing.  In this case, it all started with a post one of the girls I really liked had written. Her baby lived. Her baby was born with some issues, but the original diagnoses was wrong. Her daughter looked like she was going to make it and she was doing really well! Here comes the bad egg. Someone responded to her good news by saying something that I found to be nothing short of rude and inappropriate. This bad egg said that she should be very careful what she posts to this thread, as there are many people who would find her post difficult and hurtful to read because they didn't leave the hospital with their baby. The bad egg scolded this young mother for posting updates on her baby because it lived. I WAS FURIOUS. Here we have somebody who has been in this "support" group all these months, and now she can't post anymore because her baby didn't die? What the ****? It was then that I realized that this was not a safe place. I was let down, and disappointed. I said what I needed to about it, in a very professional way, and I left the group. At that time, I did not have a lot of hope for my Gus, but if he did beat the odds, I surely didn't want any part of a group that only cared to hear about your situation if it ended in death. I suppose the title of the group was misleading... because to the poor young mother living in NICU, that was still a poor diagnoses and she was surely very afraid and not out of the woods. Yet, she wasn't allowed to post anymore. What was she supposed to do? Go find a whole new group and start all over? UNBELIEVABLE.

I still had my friend that I could text, she actually left the group with me after that. I went on to try Facebook groups... knowing it would likely be the same kind of crap. And it was. I did get to see many kids living with Trisomy 18, and that part was good in some ways and bad in others. It is just overwhelming to see what some people are dealing with. And as always, if there is a troll in a group, they will find me. I added several Trisomy moms to my little Facebook page and sure enough, one of them could not wait to jump on a happy update I had posted about Gus. She basically said that I was ignorant if I believed that our scan was 100% a sure thing, and that Gus could have things really wrong with him and they still not see it. My initial response to this was, "What?" I wasn't really asking her what she had said, it was more like I was giving this lunatic a chance to correct herself before I went ape shit nuts on her. She then unleashed on me in a private message attack, that I ended by blocking her. You wonder how someone with a living Trisomy child can be that cold, hateful, and bitter. But there she was, and I again knew, I have to get out of here.

Support groups are great for some people. For people like me, they really don't help. They only add stress and severe anxiety to an already struggling mind. From all my research, and time spent reading other people's journeys... every single story is different. The range of issues for each case of Trisomy varies greatly. This chromosome abnormality has different effects on every kid. Yes there can be some kids who had the same struggles, but then there are others that it was not the same thing. The severity varies from case to case. In other words... one person's story is not going to look like the next. You cannot look at someone else and assume your life or your baby will be like that. There is no way to know. Some will die in utero, some will be stillborn, some will live moments, days or weeks... and some will make it years. Some will need very little assistance, some will need everything they can get to survive. I understand all the possibilities. Their story is not my story. God will write mine and in the mean time, I will not obsess over what may or may not be. It steals the joy from today... and we all need to focus on the joys of this moment.

Gus's level 2 anatomy scan came back clear. His heart is not defective, it is perfect. 90% of Trisomy 18 babies have a heart defect. Gus does not. His anatomy is developing perfectly. Those are the maternal fetal medicine doctors words, not mine. He is in normal weight range, though on the smaller end of normal. They believe I will make it to full term and that he will weight 5 to 5 1/2 pounds. The only soft marker he has is clinched hands. How can I not celebrate that news? How can I sit here and live in doom and gloom land when I get news that good. I refuse to let the trolls in this world steal that joy from me. I refuse to let the bitter and hate filled humans drag me into the depths of hell they choose to live in. I have lived there, and I don't want to stay. I moved out. I choose hope and I will be damned if I ever allow another person to rain on my parade. I am also working to not be the rain on somebody else's! Oh the things I am learning... who knew you could learn so much from someone who is so tiny. I love you Gus.

Hope Or Die

I'm going to take you back a little farther today. A few days before that special storm that God sent. I was exactly 20 weeks pregnant, and having a "just for fun" 3D ultrasound. I get them every 2 weeks or so, just to get pictures and videos of Augustus.

This was a hard ultrasound for me. It was the second one we had since the diagnosis and I was very emotional about seeing him. The tech did not do all the things she did with him the first time we went to visit. I noticed she did not measure him like she did before, or mention ANYTHING about his size etc. At the end, she asked me if there was anything else she could do for me or any questions I had. I didn't want to ask, but I could not help myself. I said, well can you see anything wrong with him? Silence. Painful silence and a strange look on her face. It was like there was a giant elephant in the room but nobody wanted to acknowledge it. She asked me, "Well how much do you want to know?" And apparently I blacked out, because my family says I didn't say anything. They didn't say anything either, and we went home.

The car ride home was plagued with deafening silence. Nobody said much. Finally, I got home and my mom asked if I wanted her to stay with me. I said no. I knew the fall out was coming. I crawled into bed, and I cried. I cried so hard and wondered how I could ever stop crying. I remember telling Gus that it was ok, he could go when he was ready. I texted my few friends at work and told them I wasn't coming in the next day and could somebody cover my shift. I told friends and family I was going to bed, and I wasn't going to get back up. I wasn't going to keep going. I was giving up. I lost hope.

I eventually wore myself out and fell asleep for a couple of hours. When I woke up, it was nearly dusk. As I laid in a very dimly lit room, I felt the darkness and the loneliness crushing me. I thought about Gus and how this wasn't what I wanted him to feel. I knew I had to at least get out of the bed. So I threw on a pair of old shorts and a t-shirt, and grabbed my giant bag of trash out of the kitchen and began walking it half a mile to the end of our road. I wasn't happy, I was still devastated, but I was up and I was out of the bed and out of the dark. The sun was beginning to set, and I looked around at nature and tried to see anything beautiful. I mumbled at God, and I kept walking in the last hours of that hot summer day.

The next day, I got up and got down to the barn to lift weights. Still not at peace, but understanding a valuable lesson. The lesson for me was... laying down and giving up isn't an option. Even if Gus dies.... I have to get up and live for him, because that's what he would want. Not to say I won't or do not have some very hard moments, hours or days. To give up completely is a death sentence. My hope has to be in that no matter what occurs, God will provide me with the ability to handle it, and to have some peace.Will I ever be the same? No, I know I am forever changed. But my hope is also that I am forever a better woman, Christian, wife, sister, daughter and friend because of my trial. I hope I will always shine for my Augustus.

The next day, my sister called the tech and asked her what she had seen. She said nothing except he was measuring a week behind. She said he had all 4 chambers of his heart and that she didn't check anything else because it wasn't a diagnostic ultrasound. I did not know at the time my family had requested that she not do any diagnostics, as they wanted me to just be happy and enjoy seeing Gus. At my anatomy scan a week later, Gus measured in range, though he was still a week behind, and showed no abnormalities. Tomorrow is our next anatomy scan and I am 27 weeks. I am terrified, and feel like I will fall apart if they see anything wrong. So hopefully, I remember all of this tomorrow.

The Storm

I have mentioned briefly the struggle that occurred for me spiritually when we got the final confirmation that Gus had trisomy 18 in a previous post. I wanted to take the time to write about that struggle, as I feel it is very important to share that experience. I am so glad I jotted things out on my instagram as I was going through things, because it helped me to remember exactly how I felt and what I was thinking. I knew someday I would want to write about it, and I know from experience that you think you will never forget the details, but alas, you do. I recognized the importance of taking notes as things happened.

It was the last week of May. I had just turned 14 weeks pregnant. As I waited for the perinatalogist to call with the FISH results of our CVS testing, I prayed. I asked that this be a false positive and that Gus be ok. I also told God that no matter what, I would praise him, I would trust him, and I would be faithful. I really believed that I could do that. After all, God had walked me through so many other terrible trials and heart breaks... surely I could somehow trust Him on this. Right? Wrong. When that call came in, and my husband had to break it to me that it was positive, I was instantly angry. Everything I had just prayed 10 minutes ago was out the window. Could I still believe that God was good? Nope, I really could not at that time. I raged. I mean I completely raged at the idea that God would allow this to happen, not only to me, but to anyone. I could not pray, I could not ask for help, I could not do anything but be enraged. The questions were many, and the inability to understand was all consuming. All the scripture I knew, all the well intended messages people sent quoting it to me, only frustrated me and made me angrier. Suddenly, scripture was just a bunch of words that meant nothing to me. It no longer applied to my circumstances.

That is a very raw and harsh thing to say. I know that many people read those words and think ouch! You poor thing, you can't see the truth. Well you would be correct, I couldn't see the truth. To me, this was beyond anything the Bible can speak to. It was and still is the most emotional, challenging struggle a person can endure. I asked things like, "If God knits babies in the womb, why would he make them wrong?" Many, many, many questions that scripture only seemed to contradict. I still don't have answers. However, I don't have the anger. This is the story of how God helped me to get past that phase.

It was early/mid July. I awoke, and went in the bathroom to start my morning routine. While I was in there, I looked out my window at the scorching summer heat beginning to creep up. It had been very dry, and very hot. I had managed to tell God thank you for the various things that I still had, such as a wonderful and supportive family, and of course my husband. I was thankful he was able to go back to work and we would have insurance after he had been laid off repeatedly. There was a lot to still be thankful for and I made myself acknowledge this... even though I was still extremely angry. For some reason, this particular morning, I prayed in the bathroom that God would send me a sign that things were going to be okay. Then I decided to get specific. I asked God to send me a storm. Not just a little shower, a full blown storm. I went about my day.

Evening rolled around. My husband was in bed watching tv. I was sitting in bed with him wondering where our french bulldog named Juan was. It was unlike him to not be in bed with us by this hour. So I went out the back door to look for him. (He has a doggie door, so he can come and go as he pleases.) There he sat on the back porch area on the side walk just gazing at the sky. I said what are you doing bubba, come inside. He would not come, so I stepped out and looked up. All around us, there was lightning. It was beautiful and there was so much of it. I sat down with Juan and we just watched. I thought to myself, this is lovely. It isn't a storm, it is probably just heat lightning, but it is lovely. I was pretty ok with the fact I got some beauty, but somewhat disappointment that it wasn't really what I had asked for. I came back inside and got back in the bed. Juan still didn't come inside. I waited a little bit, and went back outside to check on him. He remained in the same spot, still looking at the sky. I stepped out again, to go to him, and this time I heard thunder. I ran back into the house to get my husband, and told him you have to come see this. I said I prayed for a storm and I think it is coming. Together we ran out back and as we stood on the sidewalk, an almost cold wind blew so hard it nearly knocked me down. I felt a rush of respectful fear. I recognized who this was. I was being told loud and clear who was in control, and I almost crumpled at the realization that I am so small. The wind gusts were frightening to me, so I came back inside and checked the radar. Sure enough, there it was... my storm. It poured rain and it thundered and lightninged.

As it turned out, there wasn't a chance of rain that day or that night. There wasn't a chance of rain that week. The next day at work, someone came in and said, "How bout that storm last night! You know there was no chance of rain, it just came out of nowhere!" I smiled and said, well I prayed for that storm. My anger started to fade after that night. I would not say that I understand what we are facing, but I will say, I know I am not alone.

This Wasn't Supposed To Be My Life

I enjoyed the rain so much last night and into this morning. I slept well, despite having a weird dream. I cannot remember the details, but I dreamed I went to deliver Gus, and he was not there. It was bizarre. Hormones I guess.

I got up an hour later than usual, had my coffee and my bath. Cleaned my house, and started making my lunch. The phone rang, I didn't know the number, but felt like I should answer it. It was Cheryl, a children's nurse calling to talk to me about my options during labor and delivery. She was a very kind woman, who has been in this business for 30 years. They call deliveries like mine, "special deliveries." We went over some things and I decided it would be in everyone's best interest for me to go meet with the neonatologists (NICU) after my level 2 ultrasound at the new MFM doctor on the 29th. While this conversation was a blessing, it was also extremely difficult.

There is no way to know what Gus will be like when he is born. He could be stillborn, he could need help breathing, he could need a lot of different things that really, I have no idea about. I am educated pretty well in the things that could go wrong, but not so much in how doctors can help him. Therefore, Cheryl says it would really help me to meet with the NICU team to understand the language and what could happen. When they ask me a question and I need to make a decision on the spot during delivery... it would be very beneficial for me to know what they are talking about. So I have agreed to meet with them in hopes of being informed enough to make some life or death decisions.

I am going to be making life or death decisions. That is a very heavy sentence. Essentially, the choices I make for my son could save his life or end it. Without getting into detail about all  the possibilities, I just want to say that this seems insanely unfair. I do not want to be making the decisions, yet I have to make them. Honestly, I am the only one who should be making the decisions. I guess what I really am trying to get at in so many words is... why the hell do I have to be in this situation. I didn't use a question mark at the end of that sentence, because it isn't a question I expect anyone to answer. Not even The Creator.

When I think back over the plans I had for my life, I never saw this one coming. I wanted to be married my entire adult life. From the time I fell in love at 16, I dreamed of being with that one special someone. It took me a very long time, some very bad choices, and many tears with a broken heart... but I finally found my person. I always told my husband I did not want to have children. He so wanted to, but me not so much. I taught pre k and kindergarten for 7 years in a low income school. I felt pretty mom like to those kids and did not think I could tend to them and my own family. I also loved the freedom I had to do as I pleased and feared being tied down to motherhood. I also knew that I would love a child so much that it was scary. I never wanted to love someone that much.

After a bad season in our marriage, but recovering stronger than ever, we decided to "try" for a baby. We had not been on any birth control for 2 years, so I really didn't think it would happen. But on Easter Sunday, I took a pregnancy test and there it was... two lines. My husband was thrilled, my family ecstatic... I was devastated. It wasn't really supposed to happen. Whoa, that was a lot to process. As time went by, I started to love this baby. At 13 weeks, I told my son I loved him for the first time. The next day, I got a call saying he wasn't going to live. This wasn't supposed to be my life.

There has been a saying I always thought was so true... "If you want to make God laugh, just tell Him your plans." As I lay in the bathtub after hanging up with the children's nurse, I thought to myself, I cannot believe this is my life. How will I make these choices? What is our life going to look like when this happens and after this happens? And how in the world did I get here? I hug my bump and tell Gus I love him. I tell him that mamma wants to do what is best for him. Then I can only hope that sweet Gus will let me know what is best, because I can't make these decisions. No mother should have to make these decisions. This shouldn't be anyone's life.

The Choice To Carry

Before I begin telling my thoughts on the choice to carry versus termination for medical reasons... I want to say that this choice is always made out of love. I do not in any way think people who chose to terminate are bad people. I think they made the choice they had to make for themselves just like I did. I can say 100% that I do not judge them, because I had an abortion when I was 20 years old, however it was for mostly selfish reasons and a very bad situation. But that was then, and this is now. With that said, I am going to be very frank about why I chose to keep Gus, and it may be difficult for someone who has terminated to read on. Please know, I do not judge you, nor do I think less of you if you are that person.

Because I knew first hand how traumatic termination is... I seriously questioned how that was going to be "better" for my son. At the time of making this decision, I did not realize how many of these babies with trisomy 18 pass peacefully, some even live a long time. I was only informed of the worst case scenarios, which honestly, were terrifying. At no point was I ever given the other possibilities. Like I said, when I was making this choice, I only had a tiny bit of information. However, I had a lot more information personally, because I lived an abortion, and I knew that abortion wasn't any less violent than suffocation. I think when the doctors start making you feel like it's going to be a horror show, and then act like you can avoid all this by having an abortion, you naturally just go, well... okay yeah, that is what I should do. This is not the time to make a decision. Do not ever let someone persuade you when you are already so blind sided that you are not able to process or think through something.

I know my first reaction was I have to terminate. It did not take long however, to realize that no, no I don't have to do that. My beliefs were, that if God truly was in control, then I had to let him write my son's story. If I really was a person of faith, I had to allow God to do what He wanted and I had accept the fact that I was simply never going to have control over this. Truly, in life, we have very little control. We can only try to control our actions, but we can't control anything else. What a profound wake up call. It was not my place to rip my baby from my womb, from life. If he was to die, it would be naturally, not by his mother's choice to end him. I am his mamma. I am his advocate. I am the one who loves him unconditionally and protects him. I am not the one who ends his life.

No matter how short his time with us will be... he is a person. A little person who is more loved than he could possibly ever fathom. Do I wish I could miss all this pain? Yes. I wish I was going to have a baby who could live a normal life and out live me. Do I regret carrying him, or getting pregnant? No. Gus is what made me realize my capacity to love is greater than I could ever have imagined. He teaches me things that I could never have learned if he had not existed. My choice to carry him was a choice to be faithful to God, and to love him as long as God would allow me to do so. My choice was never really that hard in all honesty. I knew it was the right choice for me when the huge weight of trying to make it was lifted by realizing I did not have to terminate him. So here we are... 25 weeks pregnant today, and I love him so much my heart could burst.

CVS testing

So, after the phone call that changed everything, I was set up a few hours later with a perinatal specialist. They were able to see me that afternoon, so we went to get our level 2 ultrasound and I decided I wanted the CVS to confirm or dismiss the findings of the Harmony blood test. At that time, I believed I needed to "know". They did not see any abnormalities on our ultrasound, but I still wanted a diagnostic test, as I believed that I could not carry on throughout this pregnancy not knowing if my child had a fatal condition or not. I have since struggled with whether that was the best choice, but I really believed at that time... I needed to "know."

The CVS was scary. I did not look at the needle, but judging by my husbands face, and my mom nearly in tears... I knew it must be really big. I wouldn't call the procedure painful, but I did jump off the table when I felt it hit my placenta. It is a very foreign feeling. Hard to describe, but not really painful. It only took about 1 minute from start to finish. The doctor talked to us a little bit about rapid FISH results and that the full results would be back in 2 weeks. It may have been the longest, most gut wrenching 48 hours of my life waiting on the rapid results to come back. I knew I could not handle hearing the news, so my husband took that call. It was positive. I was frozen. I was angry.

I kept saying I knew it, I knew it. Everyone wanted so bad to believe this was a false positive blood test, but here we were, with a positive confirmation on the diagnostic test. I was furious. I had prayed all afternoon, and I had told God that no matter what I would believe in Him, that I would still worship Him, and I would trust in Him. Well, that was out the window. I know I thought I could still do those things even if it was positive, but let's be real... I could NOT. I raged at God. And I didn't stop raging for weeks. But I will write about that another time.

So, here we are... faced with the choice to terminate now, or carry our son. The specialist said that these babies suffer when they are born. They can be given pain medication, but they suffocate and it is very horrible. He said you know, you can try again and have a healthy baby. I have had lots of patients who terminated and then got pregnant again and everything was fine. He then went on to say if we wanted to be more discreet about the abortion we could go to another city. Somewhere in all this talk of abortion he mentioned that if we chose to carry to term, they would be there to support us. However, I definitely got the vibe that he believed it would be better to terminate. I left there feeling like if I chose to carry Gus, that I was cruel. Of course, my husband and I didn't want to make our baby suffer, but could I really end his little life?

The Phone Call

I was a nanny part time, and I worked at a deli/gift shop part time as well. I had been at the nanny gig for about an hour, when my cell phone rang. It was my doctor, so I answered it, not really thinking much about it. A few weeks prior, I had opted to get the Harmony blood test that screens for chromosome issues just to find out the gender early, even though we knew it was most likely a boy from the ultrasound. My sister had done it with both her kids, and it didn't cost much, so I just thought yeah lets find out what this baby is early! I had hoped for a son. But this call wasn't about the gender. I really cannot even remember the words that came from his mouth and entered my ears. All I heard was "this pregnancy is not viable". What do you mean? What are you saying? Trisomy what? As I struggled to write the words down on a old piece of paper, I remember asking is this hereditary? What causes this? And he informed me that no, it was just a "fluke" that sometimes occurs when the cells are dividing. Then I hear, "I know you will need some time to consider your options, and discuss this with family." Options? Like what options? Termination? I didn't really understand what he meant, but I took it as well, there is only one option. I asked him how accurate this test was and he said very accurate, but he would send me to a specialist to confirm it. He then asked, "Is there anyone else I can call for you?" All I could say was yes, just call my mother.

Click. I start bawling. I call my husband. I am crying so hard he instantly knows something is very wrong. He says he will meet me at home. I call the kid's mom, say you gotta come back, I have to go home. From there, my world collapsed. What did this mean? I wasn't going to be a mother? I was going to have to terminate my pregnancy? Wait a minute, I just told my baby I loved him for the first time yesterday after struggling to be okay with even being pregnant and now I don't get to keep him? This cannot be real. This cannot be happening. Utter devastation.

I arrive home, my husband is also crying so hard he and I can't process anything. We held each other and wept in the kitchen. What comes next? What is going to happen to us? So many questions, and no answers.

Intoduction

My son, Calloway Augustus, was diagnosed at 13 weeks gestation, with full trisomy 18. Some of the things I write will be going back in time, because when all of these things I went through occurred, I really wasn't in a place that I could mentally write them down other than on instagram. As time has passed, I feel the need to do more than write little notes about my journey on social media. I want to tell my story. I cannot state a purpose for this blog, I can only hope that it is therapeutic for me, and can touch someone else in a positive way. I think many people who go through great trials can only hope and pray that something good can come from whatever tragedy they are forced to endure. I cannot speak for all, but I certainly feel this way. Welcome to my blog... Loving Gus.